August 21, 2003:
I cannot sit in one place for long periods of time without significant pain. Now, I need a doctor to tell Social Security this so I can get disability. I just need to see a doctor, period.
August 17, 2003:
I haven't done anything I wanted to get done this weekend. All I've wanted to do is sleep. I can't believe that working that one day at the OTC wore me out this much! I'll be a zombie by next Saturday if that's the case.
August 15, 2003:
On a more serious note, taking this job reminded me in a rather painful way why I quit working to begin with. There isn't a spot on my body that isn't sore, and that was just from sitting at a desk! That is what fibromyalgia (FMS) does to its sufferers. Certain places on my body, called tender points, hurt when pressed just a little bit. To be diagnosed with FMS, one must have pain from light pressure to 11 of 18 known tender points. When I was diagnosed last summer, I had all 18. On top of all that, I also have rhuematoid arthritis (RA).
Wednesday, March 31, 2004
Tuesday, March 30, 2004
Between a rock and a hard place...
I went and saw the lawyer this morning...and it was a colossal waste of time. He basically told me that because I had not been to a doctor in over a year (because I have no money to pay for one), that he was not interested in representing me. The meeting lasted less than ten minutes.
The man was snotty and condescending! He gave me the impression that he did not believe I have FMS and RA. Believe me, I wouldn't even know how to fake either of these conditions!
So, I left pissed off and wondering why in the hell no one in Oklahoma will help me. I called medical clinics when I got home, and was told by all of them one or all of the following:
1. They didn't treat chronic illnesses
2. They have a clinic that relies on volunteer doctors, and these doctors have been promised that they wouldn't have to testify at SSA hearings.
3. They wanted their money up front, and/or they wouldn't accept money on a sliding scale.
So, WHAT THE HELL DO I DO NOW????
End rant.
MorelaterZ--
The man was snotty and condescending! He gave me the impression that he did not believe I have FMS and RA. Believe me, I wouldn't even know how to fake either of these conditions!
So, I left pissed off and wondering why in the hell no one in Oklahoma will help me. I called medical clinics when I got home, and was told by all of them one or all of the following:
1. They didn't treat chronic illnesses
2. They have a clinic that relies on volunteer doctors, and these doctors have been promised that they wouldn't have to testify at SSA hearings.
3. They wanted their money up front, and/or they wouldn't accept money on a sliding scale.
So, WHAT THE HELL DO I DO NOW????
End rant.
MorelaterZ--
Monday, March 29, 2004
Timeline
FMS TIMELINE
Based on FMS research that Fibromyalgia could be triggered
by a viral illness, accidents, and/or physical trauma
Winter 1976 Contracted mononucleosis
May, 1977 Sexually assaulted
February 1988 Car accident
July 1992 Broken Leg, surgery
Fall 1998 Diagnosed with clinical depression
January 1999 Separated from husband
January 2002 Injured back
February 2002 Pain in back so severe that I cannot work
March-May 2002 Took vacation, sick time, and FMLA due to continued pain while attempting to return to work on several occasions.
May 29, 2002 Last day of full time work, forced to resign from employer
June 2002 Applied for and approved for state aid (Massachusetts)
Sept 6, 2002 Applied for Social Security Disability and SSI
December 2002 Moved from Massachusetts to Oklahoma
January 2003 Saw Dr. Hill per SSA request
February 2003 Denied for Disability and SSI for the first time
April 2003 Denied for Disability and SSI for the second time; requested hearing before Administrative Law Judge
March 25, 2004 Informed of April 20, 2004 hearing with Administrative Law Judge
March 30, 2004 Consulted lawyer re: SSA hearing strategy and options
Based on FMS research that Fibromyalgia could be triggered
by a viral illness, accidents, and/or physical trauma
Winter 1976 Contracted mononucleosis
May, 1977 Sexually assaulted
February 1988 Car accident
July 1992 Broken Leg, surgery
Fall 1998 Diagnosed with clinical depression
January 1999 Separated from husband
January 2002 Injured back
February 2002 Pain in back so severe that I cannot work
March-May 2002 Took vacation, sick time, and FMLA due to continued pain while attempting to return to work on several occasions.
May 29, 2002 Last day of full time work, forced to resign from employer
June 2002 Applied for and approved for state aid (Massachusetts)
Sept 6, 2002 Applied for Social Security Disability and SSI
December 2002 Moved from Massachusetts to Oklahoma
January 2003 Saw Dr. Hill per SSA request
February 2003 Denied for Disability and SSI for the first time
April 2003 Denied for Disability and SSI for the second time; requested hearing before Administrative Law Judge
March 25, 2004 Informed of April 20, 2004 hearing with Administrative Law Judge
March 30, 2004 Consulted lawyer re: SSA hearing strategy and options
Saturday, March 27, 2004
From Mi Vida Loca: Feb. 3, 2004
I am so dragged out...
I can barely stay awake. I've been under the weather (aren't we all under the weather, if you think about it) since Sunday, so I guess I'm more unusually tired than usual. I fell asleep watching the local news this afternoon, and I had the hardest time waking up.
I wonder if all this is part of my clinical depression that I haven't seen a doctor for in over a year (since I've been in OK). Sometimes it just paralysizes me to the point where I don't want to do anything. I have to force myself to get out of bed some mornings just to get going for the day.
Me again, 3.27.04: Fatigue is a big part of FMS. It seems to be worse lately than I remember it ever having been. And, yes, depression may be a big part of it, but just a part. I'm beginning to believe now that when I was diagnosed with clinical depression in 1998, that was just the tip of the FMS iceberg.
Where did my life go? I used to be active and wanted to do lots of things. Now I can barely summon the strength to get out of bed in the morning. I gotta find the money to see a doctor about all this crap, especially since I have that hearing in three weeks. I'm going to see a lawyer on Monday to see what my options are and if I have a chance of convincing the Administrative Law Judge that I am truly disabled by this.
MorelaterZ--
Today I feel a little better...
but not much.
I slept better than I had all week, and didn't have a headache this morning. I still feel like the title of this blog though.
MorelaterZ--
I slept better than I had all week, and didn't have a headache this morning. I still feel like the title of this blog though.
MorelaterZ--
Friday, March 26, 2004
From the Archives of the Massachusetts Medical Society
(many thanks to Jeff Comeau for sending this along to me.)
Fibromyalgia, which has no known cause or cure, is both frustrating and
confusing for the three to six million Americans who struggle with this
chronic pain disorder. But in recent years, researchers have gained a better
understanding of the underlying problems that trigger fibromyalgia symptoms.
There's evidence that a combination of medication and non-drug approaches
such as exercise can help many patients feel better, according to an article
in the December 7, 1999 Annals of Internal Medicine.
Fibromyalgia isn't a disease per se, but rather a spectrum of symptoms that
can also include fatigue, stiffness upon waking, headaches, crampy abdominal
or pelvic pain and diarrhea, memory and concentration problems, and
dizziness. Fibromyalgia syndrome, or FMS, as it is also called, falls under
the rubric of rheumatology, which includes various conditions that affect
the joints or other parts of the musculoskeletal system.
According to the American College of Rheumatology's criteria for diagnosing
FMS, a person must have a history of chronic, widespread pain (on both sides
of the body as well as both above and below the waist) for at least three
months. The person must also report tenderness in 11 of the 18 tender point sites when a doctor presses on those points.
But many experts acknowledge that not everyone diagnosed with FMS will meet these exact criteria.
One aggravating aspect of the condition stems from a widespread perception
among the general public (including some health care providers) that fibromyalgia is a psychosomatic problem - the old "it's all in your head" argument. While it's true that people with FMS are often anxious and
depressed, most experts believe those feelings are the result rather than the cause of the problem. Although FMS can occur at any age, it usually shows up in midlife and is far more common in women.
Diagnostic Dilemma
There is no specific blood test, X-ray, or other high-tech image of the body
that clearly indicates a person has FMS. But compared with healthy people,
many people with the disorder have measurable differences in certain
substances in their bodies. For instance, they tend to have higher levels of
substance P, a chemical involved in pain transmission, and lower amounts of
serotonin, a brain chemical that's key to sleep, mood, and pain regulation.
People with FMS have also been shown to have abnormal brain waves during deep
sleep, when our bodies normally produce growth hormone. The level of growth
hormone, which is important for keeping muscles and other soft tissues
healthy, is also lower in some people with FMS.
But most experts believe that the primary problem in FMS is a
still-unresolved anomaly in how the body processes sensory information, says Daniel Clauw, MD, who directs the Chronic Pain and Fatigue Research Center at Georgetown University. "People with fibromyalgia aren't just sensitive to pain; they also find loud noises, odors, and bright lights aversive," he says. This hypersensitivity is probably due in part to genetic differences.
FMS and certain related health problems, including irritable bowel syndrome,
migraine headaches, and mood disorders, do tend to run in families.
But environmental influences such as stress also probably have an influence.
In fact, some - but not all - cases of FMS appear to be triggered by
mentally and physically traumatic events, such as a car accident or serious
infections (mononucleosis or influenza, for example). This may help explain
why people with FMS and related problems are more likely to have a history
of sexual abuse, domestic violence, and alcoholism, as some experts have
noted.
Finding the Right Doctor
Some primary care providers are familiar with FMS and know how to treat it,
though some refer their patients to rheumatologists to make sure the problem isn't lupus, arthritis, or polymyalgia rheumatica - conditions with symptoms that can overlap with FMS. Hypothyroidism can also mimic FMS; the same is also true for sleep apnea and hepatitis C infection, especially among men.
Sometimes, people with FMS have chronic low-grade fevers along with aches
and pains, so they're referred to infectious disease specialists. They may
also end up seeing neurologists, since FMS symptoms have been mistaken for
multiple sclerosis or even Parkinson's disease. While some people do well
with primary care physicians or rheumatology experts, those who don't
respond well to standard treatments often end up at specialized fibromyalgia
or chronic pain clinics, usually located in major academic hospitals in big
cities.
Treatment Strategies
When it comes to treatment, experts agree that a multifaceted approach, using a combination of drugs and non-drug treatments, is the way to go.
There aren't any specific drugs for treating FMS, but many different
medications have been tested, and studies of several new ones are under way.
The first step is treating sleep problems. One of the most commonly used
drugs is the antidepressant amitriptyline (Elavil), which also improves
sleep. But side effects such as weight gain, dry mouth, and daytime
sleepiness can be a problem. Other antidepressants for FMS include
venlafaxine (Effexor), trazodone (Desyrel), and fluoxetine (Prozac).
The tranquilizer alprazolam (Xanax) is another drug shown to be helpful in
FMS. Cyclobenzaprine (Flexeril), a drug that's mainly used as a muscle
relaxant, appears to both promote sleep and reduce pain.
To lessen the side effects of all drugs, the key is to start with a low dose
and increase it slowly, says David A. Nye, MD, a fibromyalgia specialist at
Midelfort Clinic in Eau Claire, Wisconsin. It often takes a lot of fiddling
to get it right, he adds.
Nonsteroidal anti-inflammatory drugs such as ibuprofen (Motrin) don't appear
to be very effective in fighting fibromyalgia pain, nor is prednisone or
other steroids. Some people find relief with injections of lidocaine, a drug
that temporarily numbs nerves, into the tender points. Another beneficial
drug is tramadol (Ultram), which seems to address both the altered brain
chemicals and pain signals of fibromyalgia. Pregabalin, an experimental drug
related to gabapentin (Neurontin), which is used for epilepsy and certain chronic pain conditions, will soon be tested in people with fibromyalgia and arthritis. Unlike other drugs for fibromyalgia that focus on serotonin, pregabalin targets pain pathways in the spinal cord-brain connection.
Alternative and Non-Drug Therapies
Many people with FMS turn to alternative therapies, according to the Annals
study. One popular supplement, 5-hydroxytryptophan (a precursor to
serotonin) showed minor benefits in one study, and several reports revealed
modest improvements in pain and depression with S-adenosyl-L-methionine
(SAM-e), a naturally occurring derivative of an amino acid found throughout
the body. While most doctors don't specifically recommend these supplements, many advise people who want to try them to experiment with one supplement at a time (keeping all other variables the same) to see which one, if any, helps them feel better. Exercise, which keeps muscles from weakening further, can be helpful.
Dr. Nye recommends starting with just three to five minutes of gentle aerobic exercise and stretching daily, gradually building to 20 to 30 minutes per day. Walking, swimming, and bicycling are good choices.
Other non-drug treatments include biofeedback, hypnotherapy, and cognitive
behavioral therapy, all of which focus on teaching strategies to help people
relax and achieve some degree of mental control over symptoms. Acupuncture is yet another option for treating pain; in fact, the National Institutes of Health lists FMS as one of the few conditions that acupuncture may help.
Finally, finding an empathetic health care provider and a support group -
both of which can offer a listening ear and advice on fine-tuning a
treatment strategy - can make a real difference in keeping FMS symptoms under control.
-The Editors
For more information: The Fibromyalgia Alliance
of America, 888-717-6711,
and the Fibromyalgia Network, 800-853-2929.
Fibromyalgia, which has no known cause or cure, is both frustrating and
confusing for the three to six million Americans who struggle with this
chronic pain disorder. But in recent years, researchers have gained a better
understanding of the underlying problems that trigger fibromyalgia symptoms.
There's evidence that a combination of medication and non-drug approaches
such as exercise can help many patients feel better, according to an article
in the December 7, 1999 Annals of Internal Medicine.
Fibromyalgia isn't a disease per se, but rather a spectrum of symptoms that
can also include fatigue, stiffness upon waking, headaches, crampy abdominal
or pelvic pain and diarrhea, memory and concentration problems, and
dizziness. Fibromyalgia syndrome, or FMS, as it is also called, falls under
the rubric of rheumatology, which includes various conditions that affect
the joints or other parts of the musculoskeletal system.
According to the American College of Rheumatology's criteria for diagnosing
FMS, a person must have a history of chronic, widespread pain (on both sides
of the body as well as both above and below the waist) for at least three
months. The person must also report tenderness in 11 of the 18 tender point sites when a doctor presses on those points.
But many experts acknowledge that not everyone diagnosed with FMS will meet these exact criteria.
One aggravating aspect of the condition stems from a widespread perception
among the general public (including some health care providers) that fibromyalgia is a psychosomatic problem - the old "it's all in your head" argument. While it's true that people with FMS are often anxious and
depressed, most experts believe those feelings are the result rather than the cause of the problem. Although FMS can occur at any age, it usually shows up in midlife and is far more common in women.
Diagnostic Dilemma
There is no specific blood test, X-ray, or other high-tech image of the body
that clearly indicates a person has FMS. But compared with healthy people,
many people with the disorder have measurable differences in certain
substances in their bodies. For instance, they tend to have higher levels of
substance P, a chemical involved in pain transmission, and lower amounts of
serotonin, a brain chemical that's key to sleep, mood, and pain regulation.
People with FMS have also been shown to have abnormal brain waves during deep
sleep, when our bodies normally produce growth hormone. The level of growth
hormone, which is important for keeping muscles and other soft tissues
healthy, is also lower in some people with FMS.
But most experts believe that the primary problem in FMS is a
still-unresolved anomaly in how the body processes sensory information, says Daniel Clauw, MD, who directs the Chronic Pain and Fatigue Research Center at Georgetown University. "People with fibromyalgia aren't just sensitive to pain; they also find loud noises, odors, and bright lights aversive," he says. This hypersensitivity is probably due in part to genetic differences.
FMS and certain related health problems, including irritable bowel syndrome,
migraine headaches, and mood disorders, do tend to run in families.
But environmental influences such as stress also probably have an influence.
In fact, some - but not all - cases of FMS appear to be triggered by
mentally and physically traumatic events, such as a car accident or serious
infections (mononucleosis or influenza, for example). This may help explain
why people with FMS and related problems are more likely to have a history
of sexual abuse, domestic violence, and alcoholism, as some experts have
noted.
Finding the Right Doctor
Some primary care providers are familiar with FMS and know how to treat it,
though some refer their patients to rheumatologists to make sure the problem isn't lupus, arthritis, or polymyalgia rheumatica - conditions with symptoms that can overlap with FMS. Hypothyroidism can also mimic FMS; the same is also true for sleep apnea and hepatitis C infection, especially among men.
Sometimes, people with FMS have chronic low-grade fevers along with aches
and pains, so they're referred to infectious disease specialists. They may
also end up seeing neurologists, since FMS symptoms have been mistaken for
multiple sclerosis or even Parkinson's disease. While some people do well
with primary care physicians or rheumatology experts, those who don't
respond well to standard treatments often end up at specialized fibromyalgia
or chronic pain clinics, usually located in major academic hospitals in big
cities.
Treatment Strategies
When it comes to treatment, experts agree that a multifaceted approach, using a combination of drugs and non-drug treatments, is the way to go.
There aren't any specific drugs for treating FMS, but many different
medications have been tested, and studies of several new ones are under way.
The first step is treating sleep problems. One of the most commonly used
drugs is the antidepressant amitriptyline (Elavil), which also improves
sleep. But side effects such as weight gain, dry mouth, and daytime
sleepiness can be a problem. Other antidepressants for FMS include
venlafaxine (Effexor), trazodone (Desyrel), and fluoxetine (Prozac).
The tranquilizer alprazolam (Xanax) is another drug shown to be helpful in
FMS. Cyclobenzaprine (Flexeril), a drug that's mainly used as a muscle
relaxant, appears to both promote sleep and reduce pain.
To lessen the side effects of all drugs, the key is to start with a low dose
and increase it slowly, says David A. Nye, MD, a fibromyalgia specialist at
Midelfort Clinic in Eau Claire, Wisconsin. It often takes a lot of fiddling
to get it right, he adds.
Nonsteroidal anti-inflammatory drugs such as ibuprofen (Motrin) don't appear
to be very effective in fighting fibromyalgia pain, nor is prednisone or
other steroids. Some people find relief with injections of lidocaine, a drug
that temporarily numbs nerves, into the tender points. Another beneficial
drug is tramadol (Ultram), which seems to address both the altered brain
chemicals and pain signals of fibromyalgia. Pregabalin, an experimental drug
related to gabapentin (Neurontin), which is used for epilepsy and certain chronic pain conditions, will soon be tested in people with fibromyalgia and arthritis. Unlike other drugs for fibromyalgia that focus on serotonin, pregabalin targets pain pathways in the spinal cord-brain connection.
Alternative and Non-Drug Therapies
Many people with FMS turn to alternative therapies, according to the Annals
study. One popular supplement, 5-hydroxytryptophan (a precursor to
serotonin) showed minor benefits in one study, and several reports revealed
modest improvements in pain and depression with S-adenosyl-L-methionine
(SAM-e), a naturally occurring derivative of an amino acid found throughout
the body. While most doctors don't specifically recommend these supplements, many advise people who want to try them to experiment with one supplement at a time (keeping all other variables the same) to see which one, if any, helps them feel better. Exercise, which keeps muscles from weakening further, can be helpful.
Dr. Nye recommends starting with just three to five minutes of gentle aerobic exercise and stretching daily, gradually building to 20 to 30 minutes per day. Walking, swimming, and bicycling are good choices.
Other non-drug treatments include biofeedback, hypnotherapy, and cognitive
behavioral therapy, all of which focus on teaching strategies to help people
relax and achieve some degree of mental control over symptoms. Acupuncture is yet another option for treating pain; in fact, the National Institutes of Health lists FMS as one of the few conditions that acupuncture may help.
Finally, finding an empathetic health care provider and a support group -
both of which can offer a listening ear and advice on fine-tuning a
treatment strategy - can make a real difference in keeping FMS symptoms under control.
-The Editors
For more information: The Fibromyalgia Alliance
of America, 888-717-6711,
and the Fibromyalgia Network, 800-853-2929.
This blog will be an attempt to chronicle my struggles with Fibromyalgia since my July 9, 2002 diagnosis. Later, I will construct a timeline, but for now, I'm going to get as much info in this blog as humanly (as a human with FMS) possible.
Today, for example: This is the fourth day this week I have awakened with a headache. For months, I have not felt like getting out of bed, but force myself to because there are things that I have to do, like take my son to school, run errands, etc.
I get exhausted when I don't do much of anything. I used to walk for exercise, but even that is too much for me. When I lived in Lawrence, Massachusetts, I walked everywhere (despite everyone telling me not to) and I wasn't too tired or anything afterward. But in the beginning of 2002, I hurt my back, and my health went to hell from there.
Since I've been in Oklahoma, I haven't had the funds to go see a doctor, so I haven't seen a doctor in over a year. My symptoms have gotten worse in the last several months, and I am miserable. I have been denied Disability thru Social Security twice, and in April, I will be going before an Administrative Law Judge for a third go-round.
I hope to use this blog to convince the SSA that I do have a problem, and that it does affect the quality of my life enough to where I cannot work. I've been looking for work for the last year, but I have not found anything, but not for lack of trying. I've had a couple of temp jobs, but those only served to remind me why I stopped working to begin with.
I joke that my cat, Columbus, diagnosed my condition, as he loves to walk all over me when I am laying down, and it hurts to the point that I have to shoo him off. I knew something was wrong with me at least a year before my diagnosis based on that alone, but at that time, I had no idea what it might be.
MorelaterZ--
Today, for example: This is the fourth day this week I have awakened with a headache. For months, I have not felt like getting out of bed, but force myself to because there are things that I have to do, like take my son to school, run errands, etc.
I get exhausted when I don't do much of anything. I used to walk for exercise, but even that is too much for me. When I lived in Lawrence, Massachusetts, I walked everywhere (despite everyone telling me not to) and I wasn't too tired or anything afterward. But in the beginning of 2002, I hurt my back, and my health went to hell from there.
Since I've been in Oklahoma, I haven't had the funds to go see a doctor, so I haven't seen a doctor in over a year. My symptoms have gotten worse in the last several months, and I am miserable. I have been denied Disability thru Social Security twice, and in April, I will be going before an Administrative Law Judge for a third go-round.
I hope to use this blog to convince the SSA that I do have a problem, and that it does affect the quality of my life enough to where I cannot work. I've been looking for work for the last year, but I have not found anything, but not for lack of trying. I've had a couple of temp jobs, but those only served to remind me why I stopped working to begin with.
I joke that my cat, Columbus, diagnosed my condition, as he loves to walk all over me when I am laying down, and it hurts to the point that I have to shoo him off. I knew something was wrong with me at least a year before my diagnosis based on that alone, but at that time, I had no idea what it might be.
MorelaterZ--
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